My Autistic Dancehttps://myautisticdance.blog
Dance with meTue, 12 Dec 2017 07:14:02 +0000enhourly1http://wordpress.com/https://s2.wp.com/i/buttonw-com.pngMy Autistic Dancehttps://myautisticdance.blog
A Token of Low Esteem—The Problem of Superficial #Autism Inclusionhttps://myautisticdance.blog/2017/12/08/a-token-of-low-esteem-the-problem-of-superficial-autism-inclusion/
https://myautisticdance.blog/2017/12/08/a-token-of-low-esteem-the-problem-of-superficial-autism-inclusion/#commentsFri, 08 Dec 2017 22:13:59 +0000http://myautisticdance.blog/?p=6312Continue reading »]]>There’s a recurring pattern that can be seen in countless organisations and government committees that have a focus on autism. Being autistic myself I’m fairly adept at recognising patterns, but this is one I wish I didn’t keep seeing.

Considering how many autistic people there are, it’s remarkable how few of us are actually involved directly in the private, charitable and government organisations that are largely responsible for developing and implementing the policies and services that directly affect our lives. Instead of having an active role, time and again we see that the autistic people on the inside are mere tokens.

A common criticism levelled at these organisations is that autistics have no voice: to address that it is not uncommon to invite one or two autistic people to join in. They are promised that they can make a difference, that their work will be important for their community. But it becomes clear after a while that they are simply there so that the organisation can point to them as a symbol of how inclusive they are. The token autistic, fulfilling a similar role to the token “black friend” claimed by those who would deny their racism.

These tokens often have a thankless job, finding their concerns are ignored by the organisation while at the same time they may end up in conflict with the very autistic community they are trying to serve as they attempt to defend their employer. Those employers do not deserve the services of these autistic people who are only there so that the organisation can point to them and claim to be including autistic voices.

Until we see more autistic-led organisations this seems doomed to continue. So what can be done to make our inclusion more effective, to get the neurotypical world to listen to our voices and concerns?

Perhaps it’s time to stop playing the nice, compliant autistic, acting grateful to have a seat at the table even if it’s away at the far end and we’re served only crumbs while the “autism parents” and other neurotypicals at the top end decide what’s best for us. The suffragettes didn’t get recognition by standing on the fringes: they made a bunch of noise. They made themselves into a nuisance that couldn’t be ignored. The sad truth is that marginalised groups don’t get heard until they start making so much noise that they can’t be drowned out.

Being a face in the crowd isn’t enough. It’s not bringing us the results we need. The well-established slogan, “Nothing about us without us” needs to be backed up by action: we need to be in command of our own destinies.

After my first response (“Fuck you!” for anybody who wanted to know) I remembered to breathe and put a little bit more thought into a statement about this latest example of autism being used as an insult, a slur. Don’t get me wrong, I have no problem whatsoever with Trump being insulted (or impeached, locked up, dumped in the middle of the ocean, fired into space, etc.). But you don’t throw my identity around as a slur.

Bottom-feeding pond life like George Will don’t care about what autism is, only that it isn’t them and it can be used to imply their target is a failed, broken person. It’s the same when those who commit evil abhorrent acts like mass shootings are referred to as mentally ill. It’s all used to distance those people, to say they’re not like “us normal folks”. It’s called “othering”: there’s us, and there’s them, the “others”.

So that they don’t have to confront the idea that people just like them can be awful human beings, they stick labels on them. Doesn’t matter what the label is, whether it’s appropriate or accurate. Only that it refers to some other group of people who they see as inferior.

Autism and mental illness are not your go-to bogeymen, tales to frighten children. Not monsters, not sub-human. We are not “less than” anybody else. This is not acceptable. So take your false stereotypes about empathy and everything else and stick them up your ass.

You can see I’ve thought deeply about it. So now I’ve got a more considered, rational response to George Will, Newsweek and any other shitstain who throws people like me under the bus:

This is based on a presentation I gave to colleagues where I work today titled Understanding Autism. Although not a transcript, the text here is based on my detailed speaker’s notes.

Apologies in advance for the rough editing I performed to put it into the shape you see here, but I didn’t want to spend all night polishing it. So without further ado, here we go!

I’ll start with brief description of what autism is.

It’s a developmental condition, a neurological difference. The brain’s wired differently, works a bit differently. I don’t refer to it as a “disorder”: current practice has moved on from that view of being “damaged” and now many see it as part of the normal range of human diversity. Neurodiversity. Diagnostic manuals like ICD-10 and DSM 5 have yet to catch up.

Most autistic people prefer to be called autistic, rather than described as “having” autism or being someone “with” autism. It’s a significant part of who we are, you can’t separate out the autism.

It’s what’s called a “spectrum condition” – it manifests in a variety of ways. “If you’ve met one autistic person, you’ve met one autistic person.”

Key traits include difficulty with social interaction. It’s hard to understand other people because they don’t think the same way: growing up you see people around you managing it and it seems like some kind of magical telepathy. It takes time and effort to learn how to do it. Goes both ways: hard for NTs to read autistic folks too, but there’s more NTs! It’s hard to learn the rules for it.

Autistic people commonly have very strong interests – almost obsessive (sometimes referred to as “special interests” although I dislike that term). Like a fanatical supporter of a football team who knows all the players and stats.

Also sensory processing issues – many are over- or under-sensitive across one or more senses, so may have trouble with bright lights or loud noises, scratchy fabrics. Stimming (self stimulation) can be used to regulate sensory input (rocking, tapping feet, twirling hair, fidget spinners, etc).

Other traits include echolalia (or palilalia), scripting (use of a stock phrase in a particular situation – may have no obvious connection to that situation except that it once happened and kind of stuck).

It’s genetic which means it’s heritable so it runs in families. It’s lifelong: you’re born that way, like being dyslexic or left-handed. So it doesn’t “go away”, you just get better at coping with the obstacles it puts in your way. In the UK more than 1 in 100 people are autistic, in the USA the CDC report 1 in 68 (although there’s some pressure there to diagnose so people are covered under health insurance). Between 2-4 times as many males as females, but at least some of that probably reflects bias in diagnosis: the early research involved autistic boys.

There are a lot of misconceptions and myths about autism and autistic people.

It’s NOT a disease – you don’t “catch” it, it’s not infectious.

It’s not caused by vaccines. If you remember all the stuff about MMR, that has no basis in fact. The GMC struck-off Andrew Wakefield, his research paper was retracted by the BMJ because it was fraudulent. He had a conflict of interests: an undeclared financial interest in an alternative to the combined MMR vaccine, and falsified results. Since then there have been hundreds of studies involving over a million people and they have all found no evidence of any link.

It’s lifelong, you don’t grow out of it. Autistic children become autistic adults, they don’t disappear. But social services often stop at 18, and provision for adults is sorely lacking.

Autistic people do have a reputation for being cold and emotionless. Like Mr. Spock in Star Trek – Vulcan, all logic, no emotion. The truth is many of us are highly emotional, it’s just that we: 1) don’t show it in the same ways, and 2) often have difficulty identifying and describing how we feel (alexithymia). We also do have a sense of humour, but like us it’s autistic and prefers to avoid crowds.

And I have to mention Rain Man. Everyone thinks of Dustin Hoffman’s character, Raymond. (In fact the character was largely based on Kim Peek who was a savant but not autistic.) Savants are uncommon – most autistic people fall within normal (as in average) ranges for cognitive abilities. And we’re not all brilliant at maths or computers (although some are – I’m too modest to suggest that applies to myself). We’re also well represented in the arts – I have a number of autistic friends who are professional artists or writers.

Some medical conditions are common among autistic people – doctors refer to them as “co-morbid” conditions which sounds somewhat ominous.

Gasto-intestinal issues, IBS, acid reflux. A significant number of autistic people have some food intolerances. Some of these issues can be stress-related – stress and anxiety are very common, not least because of the obstacles we face.

Dyslexia is sometimes called “word blindness”, essentially a difficulty interpreting letters and words. Dyspraxia affects coordination, may be clumsy, have poor balance. It can also affect speech and writing, things that require fine motor control.

Ehler Danlos Syndrome is a genetic condition affecting connective tissues which can lead to joint hypermobility or fragile skin. In some cases it can affect mobility via unstable or painful joints, and can be prone to dislocations. EDS can also increase the risk of hernia or prolapse.

Epilepsy is a condition affecting the brain leading to seizures. These may be anything from strange sensations or appearing unresponsive, up to the “classic” fit with uncontrollable jerking and shaking. Seizures can be triggered by stress, lack of sleep or other factors, and can cause injury, damage to the brain, or even death.

Synaesthesia – kind of like cross-talk between different senses. For me “A” is bright red while “S” is green. I also get visual responses to some sounds. For a friend of mine the number 8 is “shifty”.

Any parents here will be familiar with developmental milestones: when a child starts sitting up, crawling, walking, talking and so on. Autism, being a developmental condition, is often identified after around 2.5 – 3 years when development slips against the “standard” milestones. Not to put too fine a point on it, those are milestones for allistic (non-autistic) development. Autistic children develop according to their own timescales.

The phrase “special interests” is used to refer to the sometimes all-consuming hobbies that many autistic children pick up. Many children have interests that border on the obsessive – think of walls covered with Take That or Westlife posters (I’m probably showing my age). My walls: maps. It’s often more the subject of the interest that stands out – it’s often not mainstream.

School brings its own challenges, many of them social. I would say the majority of my autistic friends were bullied because they didn’t fit in: they were the weird kid who didn’t have many friends (if at all). But also the school environment can bring sensory challenges. Noise, lighting. Being forced not to stim (often seen as distracting, or not paying attention when in fact it helps us to focus), to make eye contact (many autistic people find that uncomfortable).

The social aspect is one of the most challenging. How to interact with other people seems to be something that comes instinctively to NTs. We… could really use an instruction manual. Something to spell out all the unspoken rules.

The other thing is that social interaction is tiring. Most of us need a certain amount of it – we are human beings, social animals. But we also need down time, time out on our own. I was perfectly happy playing on my own for hour after hour as a child, with just the occasional activity involving others.

There’s a growing number of parents of autistic children choosing to home school these days – it often works well because of the much greater flexibility. It’s certainly something to consider if you have an autistic child who’s struggling with the conventional school environment.

I mentioned home schooling which is one way to better accommodate the needs of some autistic children. Accommodations are the key, really: many of the aspects of autism that create obstacles can be alleviated by adapting the environment. It’s like any other disability in that respect. We need access to the same things as anybody else, but when the world is shaped for NT needs it’s harder for us to make our way.

Some things that can be done fairly easily and cheaply: variable lighting, quiet spaces, “Do not disturb” indicators. Headphones, perhaps noise-cancelling – it depends on the person’s needs. The ability to attend meetings “virtually” rather than having to be physically in the room with many other people.

It’s also important to be flexible with communication. Many autistic people are not comfortable using the phone so offer alternatives such as IM/webchat, email. Some are non-speaking or find speech difficult at times, so don’t rely entirely on voice-based communication. There are a number of companies out there who you can only get in contact with via the phone – think of taxi firms, take-aways: businesses you might want to use regularly – but also some big corporations too.

Mentoring can be very effective for autistic people – that kind of focused, one-to-one or small group-based personal development. The thing is, a lot of us are really bad at asking for what we need, and it takes patience and the establishment of trust before we can start to ask for things we need. Providing a mentor or some other single point of contact helps with building that kind of connection.

Autism is still viewed negatively by a lot of people – parents especially fear what it might mean for their child. And I’m not going to stand here and tell you it’s all wonderful because it can be very challenging. Autistic children sometimes require a lot of attention and it can be difficult to learn how to communicate with them effectively, how to tell when something is distressing them or making them feel uncomfortable when they might well not be able to express it directly. But increasingly there are resources out there offering help and advice.

I and other autistic advocates push for increased acceptance of autism. There are any number of “awareness” campaigns – you’ve probably heard about autism in the media. But awareness just means that people have heard the name. Unless they research it themselves they don’t learn what it is and don’t end up understanding it. And to be honest the people who understand it best are people, like me, who are autistic. Even doctors and researchers who have been in the field for years don’t have the insight that you get from actually experiencing it every day. We push for acceptance, to be recognised and included as autistic people, and not forced to mimic NTs. Most autistic adults, myself included, mask our autism to some degree because we’ve had to fit in to be accepted. But it takes effort to do that: it can be exhausting, so we don’t want the next generation to have to endure it.

Growing up autistic you get used to being told, “Don’t do that!” So what a relief when you get past all that, find other autistic folks, and finally get to be yourself! Am I right?

Except…

Sooner or later you run into the Autistic Behaviour Police. If you’ve spent any time online as an autistic person you have probably encountered them. Maybe you equivocated when asked about puzzle pieces. Maybe you showed ambivalence about identity-first language.

Maybe instead of ideological purity you value independence of thought? Somebody describing themselves as “having autism” doesn’t threaten or invalidate my own autistic identity. I have reasons for my preference and I can express them if people are interested. Likewise, if an autistic person feels an affinity with the puzzle piece who am I to tell them they can’t?

At heart neurodiversity is all about recognising and accepting differences without judgement. Without ascribing values to those differences. There is no better or worse. Whether neurotypical or neurodivergent in all our variety, we all just are.

There are some who preach acceptance but don’t live it. They only accept their own forms of difference, people who are like them. They see their own way of being, their own way of thinking as the only right way, the One True Way.

That is the path to intolerance, not acceptance. It’s another way of saying, “It’s my way or the highway!” Remember back to the people who kept telling you how to act. Who told you to sit still, look them in the eye, stop fidgeting. Those are the kind of people who believe there’s only one right way to be. Those are the kind of people who try to force you onto their path.

Don’t be one of those people. Everybody has their own way, and as long as they’re not harming folks there’s nothing wrong with that. Accept it. Accept them.

Filed under: Autism Tagged: Acceptance, Neurodiversity, Peer pressure, Stereotype]]>https://myautisticdance.blog/2017/08/30/the-one-true-way-of-being-autistic/feed/8alexforshawNoWayAn Open Letter To @Twitter — Protect Epileptic Users From Flashing GIFshttps://myautisticdance.blog/2017/08/25/an-open-letter-to-twitter-protect-epileptic-users-from-flashing-gifs/
https://myautisticdance.blog/2017/08/25/an-open-letter-to-twitter-protect-epileptic-users-from-flashing-gifs/#commentsFri, 25 Aug 2017 03:19:00 +0000http://myautisticdance.blog/?p=6013Continue reading »]]>A couple of weeks ago, on and around August 10th there was yet another long-running argument being conducted on Twitter between anti-vaccine supporters on the one hand and autistic advocates on the other.

You’re probably thinking, “So what?” These arguments go on almost constantly and what does it matter? Well, events this time transpired differently when one of the participants tweeted a strobing GIF to somebody who had earlier identified themselves as having photosensitive epilepsy.

I was participating in that heated discussion. The flashing GIF was tweeted to a very dear friend of mine and came within a whisker of triggering a seizure. The person who sent it followed up by asking if the recipient was dead: it was absolutely clear that they intended to cause harm.

It’s fairly widely known that such GIFs can trigger seizures in susceptible individuals and that such seizures can be life-threatening. That is why a court in Texas accepted earlier this year that when used in this way a strobing GIF image is classified as a dangerous weapon.

The earlier incident that led to this court ruling was widely reported in the media around the world, such as in this report from a UK daily national newspaper. So there is no question that the potential of these animated images to cause harm is public knowledge and has been for some time.

It is also the case that broadcasters in the UK (and I assume in other countries around the world) are prohibited from broadcasting dangerous flashing video images, and required to issue warnings where this is unavoidable, such as in news broadcasts involving flash photography. [Ofcom Guidance Notes (PDF)]

I believe it’s time for Twitter to be held similarly responsible for preventing such assaults against their users, or at the very least taking reasonable steps to protect their users from harm.

As was noted in the Texas District Court filing, these animated GIFs play “automatically when the tweet [is] viewed”. The combination of being able to embed such flashing animations in a tweet along with the knowledge that they will be shown without the need for the recipient to take any action makes them exceedingly dangerous to susceptible people.

Even without malicious intent they pose a potentially deadly risk. But we know they are being used deliberately with the intention of harming the recipient. Why is Twitter not taking action to protect vulnerable users of its platform? It’s only luck that deaths have been avoided so far: is that what it will take before Twitter does the right thing?

Please, Twitter. You have the technical expertise to make this happen, to protect your users with photosensitive epilepsy from this very real risk of harm or death. The ball is in your court. I hope you will do the right thing.

I thought I was free. I thought I could cope with limited contact, dealing with my ex occasionally. Trying to be amicable, even helpful. I was wrong. The same issues that caused me anxiety and fear before I left still happened. The blame, the criticism, the gaslighting. Trying to make me feel responsible for the situation she found herself in.

The worst part: it kind of worked. She knows my buttons all too well and how to push them. I found myself involuntarily responding in the same old defensive ways. Becoming anxious, afraid.

And then, several weeks after I moved into my new home, I started to experience the unsettling sensation of being back in the previous place. Back in that little room. I’d be sitting here at my table in my living room, but I’d be seeing that other room all around me.

I would feel I was literally back there. And I’d become anxious, and scared that she would walk in on me. I know in my rational mind that she doesn’t have my new address and can’t get through the two locked doors to gain access. But in my mind I wasn’t here, I was there. And it frightened me. A lot.

This kept happening, getting worse as she kept contacting me online or by phone. Some of the communication was attempting to pressurise me into doing things: that would trigger these flashback episodes. In fact, even just writing about it here is making me anxious.

Because it involved flashbacks I wondered about post-traumatic stress, but I wasn’t aware of whether that could be caused by emotional or psychological abuse rather than physical trauma: it can. I looked into it and took the recommended course of action: I arranged to see my doctor.

I spoke to trusted friends, people who had experience of similar situations. They advised me to cut all contact for my own good. I took the advice, blocked her online and barred her number on my phone. It helped. Except I couldn’t block voice mails.

There were more than 20 voice messages when I contacted my cell phone provider to find out if there was a way to block her from leaving them (short answer: not reliably), and how to delete the existing ones without having to listen to them (resolved successfully).

That reduced my stress and I’ve not been experiencing the flashbacks at the same level of intensity. It’s helped a lot. The trouble is that it’s all based on avoidance and there remain unresolved matters between me and her. I know I need to get them sorted out, but I’m not sure I can manage that.

I’m seeing my doctor in a couple of days. I’m hoping we can make some progress. because right now I’m in a kind of limbo: things hanging over my head and I’m aware they’re there even if I’m not actively looking up at them.

Filed under: Autism Tagged: Abuse, Anxiety, Emotions, Relationships, Stress, Trauma]]>https://myautisticdance.blog/2017/08/23/dont-speak-living-with-the-trauma-of-emotional-abuse/feed/14alexforshawShhhReblog: “Open letter to those who think autistic kids should not be allowed to disturb mainstream education settings” by Michelle Suttonhttps://myautisticdance.blog/2017/08/06/reblog-open-letter-to-those-who-think-autistic-kids-should-not-be-allowed-to-disturb-mainstream-education-settings-by-michelle-sutton/
https://myautisticdance.blog/2017/08/06/reblog-open-letter-to-those-who-think-autistic-kids-should-not-be-allowed-to-disturb-mainstream-education-settings-by-michelle-sutton/#respondSun, 06 Aug 2017 13:13:47 +0000http://myautisticdance.blog/?p=5954Continue reading »]]>Michelle Sutton has written an excellent summary here of the issue of including autistic kids in mainstream education, and why improving the school environment for autistic needs can benefit everyone. Definitely a must-read.

As usual I’m coming into the discussion “late”. The conversation about inclusion of autistic students in our nations classrooms has been at the forefront of all my social media feeds this week, and I’ve been sitting here, swinging between trying to take it all in and trying to avoid it.

don’t

We need role models, not ammunition for bullies.

Filed under: Autism Tagged: #ActuallyAutistic, #Atypical, Representation, Stereotype, Stigma]]>https://myautisticdance.blog/2017/08/02/writing-autistic-characters-an-actuallyautistic-perspective/feed/2alexforshawWriting AutisticsOn the Red Dot – autismhttps://myautisticdance.blog/2017/07/26/on-the-red-dot-autism/
https://myautisticdance.blog/2017/07/26/on-the-red-dot-autism/#respondWed, 26 Jul 2017 13:45:33 +0000http://myautisticdance.blog/2017/07/26/on-the-red-dot-autism/Dawn-joy Leong: https://youtu.be/8iFls4KHh6w Lucy and I were featured on Mediacorp’s Channel 5 – On the Red Dot – last week, 21 July 2017. The programme was about autism in Singapore. The full programme is at the Toggle site – though I am told that people outside of Singapore may not be able…]]>

Dawn-joy Leong, accompanied as always by her darling Lucy, speaks eloquently about autism and acceptance on a TV programme broadcast last week in Singapore.

Filed under: Uncategorized]]>https://myautisticdance.blog/2017/07/26/on-the-red-dot-autism/feed/0alexforshawPerfect storm. #autism – by Sonia Boué (reblog)https://myautisticdance.blog/2017/07/20/perfect-storm-autism-by-sonia-boue-reblog/
https://myautisticdance.blog/2017/07/20/perfect-storm-autism-by-sonia-boue-reblog/#respondThu, 20 Jul 2017 10:32:08 +0000http://myautisticdance.blog/?p=5882Continue reading »]]>Historically I’ve not often reblogged posts by other writers — in fact it’s probably only about 3 times in all the years. And that’s because I wanted the focus of this blog to be me. But now, with the “rebranding” and relaunch as My Autistic Dance I feel I want to expand what I publish here to include links to other posts that are insightful and illuminating, and principally about autism, such as this one by my dear friend Sonia.

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.